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Virginia’s Miracle Season

This is a guest post by, Judith Ursitti, Regional Director State Advocacy Relations at Autism Speaks.

The message struck me as I tore off the page on my daily calendar.  “If a miracle can happen at anytime, then why not today?” It was January 21st, the final day to file legislation in the Virginia House of Delegates for the 2011 session.

We had our champions in the Senate.  Senator Janet Howell had been inspired by her grand nephew who had autism and had once again stepped up to lead the charge.  Senate Majority Leader Dick Saslaw had been inspired as well, and under his leadership, autism insurance reform legislation actually passed the Senate in 2010, only to die in the place it had died for multiple years:  the House Labor and Commerce subcommittee.

I breathed a heavy sigh, knowing that we would need nothing short of a miracle to make it out of that subcommittee in 2011.  It was the same group of legislators who had refused to even take a vote on the bill the two prior years.  There was no reason to believe our outcome would be any different this time around.

But we had to keep pushing.  We just had to.  Family after family had testified in Richmond about their struggle to pay for the most basic treatments for their loved ones with autism.

One mother spoke of her two preschoolers, both of whom had been recently diagnosed.  Their doctor had prescribed Applied Behavior Analysis therapy for the boys, knowing early intervention was crucial.   She blinked back tears as she held up photos of the two sweet faces, asking the legislators, “Tell me .. which one?  Do I give them both just a little therapy, knowing that it’s not even close to enough?  Or do I focus on giving the appropriate amount of therapy to just one?”  These were the sort of choices Virginia families were being forced to make because health plans specifically excluded treatment for autism.

Another mom spoke about how health insurance had covered the treatment for her son with leukemia, but her son with autism was categorically denied.  This was discrimination, plain and simple and legislative action was needed to end it.

You would think with such compelling testimony, legislators would move swiftly to correct the problem.  But our opposition had a strong presence and created just enough confusion to convince them otherwise.  They shrugged their shoulders and pointed to the educational system, saying autism was something that should be dealt with in the schools.  They made outrageous claims about the cost, claiming that if autism were covered, Virginians would end up losing their healthcare because it would be too expensive.  Businesses just couldn’t bear this additional burden.

Fortunately, not only did we have compelling family stories on our side, we also had facts.  Actuarial studies and experience data from other states indicated that coverage would likely increase health insurance premiums less than half of once percent; mere pocket change.  Another study commissioned by Virginia’s Joint Legislative Audit and Review Commission indicated that billions of dollars in special education services could be saved if children were provided intensive early intervention.  The Virginia Chapter of the American Academy of Pediatrics stepped up to testify regarding the efficacy of the treatments included in the legislation.

So here we were, heading into yet another legislative session, the filing deadline looming.  Even with the families and the facts in our arsenal, Virginia legislators had turned us away, year after year.  We needed a breakthrough desperately.

On January 21st, that breakthrough came.  I began the day, wearily tearing off the daily calendar page, knowing that miracles were something nice to think about, but just not reality in the world of autism.  I ended the day on a very different note.

I’ve actually saved the e-mail that I sent to my colleagues at 5:30 pm that Friday.  The subject line tells the tale.  It simply reads, “Do you believe in miracles?”   I went on to explain that an extraordinary development had occurred.  Not only had our autism insurance legislation been filed in the Senate, but it had also been filed in the House.  As anticipated, Senator Howell was listed as our patron in the Senate and Senate Majority Leader Saslaw’s name was there as well.  What we didn’t anticipate was that, in addition to our two new sponsors in the House (Delegate Tim Hugo and Delegate Tag Greason) another patron’s name had been added to the list:  Speaker William Howell.

This was the breakthrough we needed.  With the Speaker on board, the House subcommittee where had died two years running finally voted us out of committee favorably.  We quickly navigated through committees in both the House and Senate, eventually passing both chambers and heading to the Governor’s desk.   Governor McDonnell initially protested, sending the bill back to the legislature with amendments.  The legislature stood strong, rejecting the poison pill amendment and, thankfully, Governor McDonnell saw fit to sign the legislation into law on May 6th.

It is worth noting that this was not a miracle that happened in a vacuum.  This miracle was the product of a great amount of blood, sweat and tears.  It was the result of the commitment and determination of members of the Virginia Autism Project, a group of stakeholders who literally worked for years to see this effort through.  It was the product of the leadership of legislative champions including Senators Howell and Saslaw, Delegates Greason and Hugo and Speaker William Howell. The members of Autism Speaks’ Government Relations team have been honored to work alongside this incredible group of miracle-makers over the past three years.

If a miracle can happen at any time, then why not today? It’s a question worth asking as we work to pass meaningful autism insurance reform legislation across the country.

I’m happy to tell you that I now know the answer…

And it’s an unequivocal, “Yes. Absolutely… Why not today?”

  1. May 12, 2011 at 8:53 am

    Dear Ms. Ursitti,

    Thank you for sharing this post, and yes, I do believe the title of it is apt. Five years ago I left Virginia with my husband, and then two-year-old son, and moved to New Jersey because the Early Intervention services in the state were completely inadequate for my boy. Justin was seventeen months old when he was diagnosed with autism, and due to the fact we were only offered eight hours of services a month, not the 30-40 per week that were universally recommended, I became his primary ABA therapist. Fortunately, I have a background as an educator, and was able to quit my job in the Fairfax County Schools, a choice I am eternally grateful I could make. For the next fifteen months until we were able to relocate, I spent 6-8 hours a day, five days a week, conducting ABA therapy with my son, because there was no other recourse for him, and our insurance would not cover the cost of hiring therapists. Needless to say, it was a grueling endeavor.

    I was overjoyed to read of the Virginia legislature’s decision several months ago. I am hopeful parents will be better able to afford to supplement their children’s therapeutic programs until they are of school age. I applaud both you and the Virgina Autism Project for your hard work and determination. I can speak firsthand to how greatly this new policy will help many overwhelmed and frustrated families. I also continue to hope that one day my former adopted state will more closely emulate the model that New Jersey provides for Early Intervention services, which will further aid families. Children are being diagnosed at twelve months of age. The gap between diagnosis, and being of school age, needs to be filled more appropriately.

    Again, it was with a glad heart that I read this post this morning. Thank you!

    Kimberlee McCafferty


  2. May 12, 2011 at 3:48 pm


    I’m so thankful you took the time to share your story and even moreso that you are aware of the plight of Virginia families.

    Autism services are far too contingent on one’s zip code or bank balance .. To me that is unacceptable. Passage in Virginia is just another tiny step toward righting that wrong..

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